Last reply 3 years ago
Conflicting messages

Hello everyone!

I’ve recently been diagnosed with RRMS whilst living in Australia (i’m originally from Staffordshire and over here working on a 457 visa) and was wondering if anyone else had received ‘conflicting’ messages from their healthcare professionals.

I was only diagnosed last week and so far i’ve had varying messages from different specialists on how MS is going to affect my life in general.Here’s a brief run down:

It’s manageable now, bit like having an allergy (eye specialist)
Wait and see how we go (neuro)
Bugger! (Nurse giving me my steroid IV)

Now i’m aware that nobody is able to give me a clear prognosis as MS is unpredictable but every single person i’ve spoken to has ranged from overly optimistic to pretty much writing me off full stop!

I can’t say that this is helping me digest the news any better, on any given day i can veer from ‘ok, so I have MS’ to ‘OMG! I’ll be in a wheelchair in 5 years!’

Has anyone else experienced this? I really don’t know who i should be listening to right now.

So glad I found Shift, everyone seems so well grounded and pretty optimistic!

Thanks,

Sarah

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stumbler
3 years ago

@saraha84 , given the circumstances, I’m glad you found us.

You’re quite right about the prognosis, it is unpredictable and no two people have the same journey. Everyone has a view on MS because they know someone who has MS, who is either doing well or not doing well.

The thing is that the only people who really know about MS are those who have MS!

So, what is MS. Well, it’s an incurable, progressive neurological condition. It won’t kill you and it is now manageable. I say this as I approach the 30th anniversary of my first MS episode.

OK, I own a wheelchair and I have two sticks, but they’re not used around the house and I can still manage stairs (just!). Also, I haven’t had the benefit of all the medical advances that will be available to you.

So, any advice for you? Well, ensure you have balance in your life. By this I mean a healthy balanced diet and a lifestyle that avoids extremes. Start “listening” to your body. Your body will tell you if it’s not happy and it is always wise to take note of these warnings.

And finally, see if you can banish worry and stress from your life. I know, you’ve just had a diagnosis. But, there’s too many of us that associate relapses with periods of stress. These negative emotions do release chemicals in the brain which can have a detrimental effect on our Central Nervous System (CNS), which is the area that MS attacks.

So, be kind to yourself and learn about MS. The more you know, the better you can live your life. And we all try and live together in peaceful harmony with our MS.

Hope that helps.


saraha84
3 years ago

Thank you Stumbler, that’s good advice.

The ironic thing is that over the last 12 months i’ve stopped smoking, drinking and lost over 50lb in weight and here i am with a diagnosis of MS. One positive thing i can take away from all this is i’ve already put in place some of the tools for a healthier lifestyle before my diagnosis so it shouldn’t be too hard to keep it up (apart from maybe the half block of Cadbury’s i’ve just scoffed!)

I’m starting to feel like MS is becoming my second job- between online research, visits to the library and grilling my MS nurse on an almost daily basis i’m devouring anything and everything i can get my grubby little mits on. I have to say though that there is an awful lot of negative and often frightening stuff available in the online sphere so i’m thankful i found this site when i did!


stumbler
3 years ago

@saraha84 , that healthier lifestyle will be a good basis to manage your MS.

And, be very wary of Dr. Google. They’re a bit ambivalent with the advice that they give out! 😉 You always have to verify that a website is creditable before you enter. In the UK, the MS Trust and worldwide, the MS Society, are best for information.

And, Cadbury’s do do good MS medications, but more for female sufferers! 😆 And, having had this diagnosis, a bit of pampering is in order.


graham100
3 years ago

Yes I agree with stumbler, though since my diagnosis 2yrs ago iv taken all the up to date drugs on offer, and am now it would appear in a worse state than stumbler,, can’t even stand on the spot for more than about 3mins without collapsing to a heap on the floor, I’m being picked up about 6pm going to a friends for cocktails then out for an Indian. So it’s only as bad as you let it be. Iv been told iv probably had it since my 20s but didn’t know, so now at 58ish,, iv had a bloody good run, you now need to run your life on a day to day basis. Only you can make it work. Good luck.xx.


graham100
3 years ago

By the way. Your right non of the so called professionals know what they are talking about. The only thing they are right about is there is no cure,, YET. Hmmm


cameron
3 years ago

Like you, I spent a long time post-dx reading up/trying out complementary therapies and quizzing anyone who knew anything. I’m not sure you CAN avoid this process, because it’s part of an individual’s getting to grips with a chronic illness. However, having spent the time, read the books and self-monitored, these have been my conclusions.
1 The right medical support is THE most important thing. You may be dead lucky but everyone I’ve met with MS has needed support over the years not just from the neuro but from their GP and other health professionals e.g. physio, continence. My advice: if you have issues with any of your team, sort it. Change GPs, do whatever. Only the best practitioners are good enough for what we need.
2 The psychological impact of MS can worsen symptoms. But put another way, at the point when you’re happy with your med team and have settled into therapy, the reduction in stress may help you enormously, to the point where it can cancel out some symptoms. Managing stress in your daily life needs to be top priority.
3 With lots of drugs on the horizon, the aim must be to keep in really good nick. As I’ve been told many times, it’ll be no good being offered a new treatment in ten years’ time if you’ve let your body go. So (boringly!) a good diet, lots of sleep and as much moderate exercise as you can manage.
4 Back to my first point – managing yourself healthily may in itself need support, so again – make sure your med team is as good as it can be.

For the rest, as far as I can see, there’s a lot of snake-oil about. But this site will give you smart tips on daily living and answer a lot of questions without your having to fork out large sums on so-called cures.
Lots of luck, keep smiling, the worst of your anxiety is probably behind you now! xx


thecuriosity
3 years ago

Basically I’ve had nothing but conflicting messages, I think the worst was when my father basically just swore down the phone at the diagnosis when I told him. He’s always the one who knows what to do, so I think a lot of it comes down to the experienced people we speak to have had. I definitely don’t think “bugger” helps, but you also can’t say blindly everything is going to be fine.

You sound like you’re making positive steps anyway, and as long as you’re trying to keep a positive mental attitude and just keep asking the questions you feel you need answers to I think you’re doing the right things. One of the things my neuro was keen to do was stop me from digging up a lot of the really negative content on the internet while I was waiting on dx, because stress is a big bad wolf for me.

Unfortunately I’m the kind of person who’d already read a lot before he even got to meet me.

Like you though I’ve been trying to clean up my eating habits (er, let’s not discuss drinking ones..) and do exercise, and that alone made most of my neuro team happy because they said that’s the most important start. I just try not to focus on the negative. It’s hard, but you can do it.

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